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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Seeing some immediate improvement with ARVs

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Charles555nc, May 2, 2014.

  1. Charles555nc

    Charles555nc Senior Member

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    I have diagnoses of CFS and Lyme disease and was tested positive for XMRV. (also was positive for Rocky Mountain Spotted Fever, epstein barr, cmv, c. pneumoniae, mycoplasma)

    I have seen improvement before with
    1. Low Dose Naltrexone
    2. Famvir.
    3. Large antibiotic doses in the beginning. (clindamyacin, zithromax, and tindamax)
    4. Sizeable amounts of organic grape juice (resveratrol).
    5. Very low fat diet (hard but reduces symptoms by alot, in the short term)
    6. Large but completely temporary improvement with EDTA and DMSA chelators.
    7. Valcyte
    8. Repeat doses of tindamax.
    9. Was crazy low in zinc and molybednum. Supplementing helped, but dont go overboard.

    and now

    10. Isentress and Truvada.

    I couldnt tolerate them 3 times in a row, until I went on a low fat diet and used DMSA to chelate the biofilms in my body (right before starting the meds), these two steps reduced biofilms enough to reduce the IRIS type reaction, which I think were causing an autoimmune nerve damage type symptoms to the ARVS, particularly to Isentress.

    Edit: Benedryl helped wonders when I had herxheimer reactions caused by meds.
     
    Last edited: May 4, 2014
  2. tdog333

    tdog333 Senior Member

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    How did you dose the DMSA and how long did you take it
     
  3. Charles555nc

    Charles555nc Senior Member

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    After I improved about 35% with the ways I mentioned above...and only then did I start the DMSA

    I started with 200 mg DMSA on an empty stomach and took it every 4 hours on an empty stomach. I also didnt eat for at least an hour afterward (dont want the dmsa stealing metals from your food). I did this all day and then repeated another day in the next week.

    Slowly I built up my tolerance after repeating this once or twice a week (and taking multi vitamins five hours after the last dose of DMSA to replenish minerals).

    So basically after working up from 200mg over 30-40 repeatings. I got up to 800mg in a single dose then two 400mg doses the next 4 and 8 hours after that. I found that this high a dose actually made me feel it working in my central nervous system, particularly my eyes. So hopefully it helps effect any biofilms in the blood vessels of my brain.

    When you are immuno suppressed you get infections everywhere, blood vessels, joints, intestines...and if they last long enough, you get biofilms.

    If you are gonna work up to high doses make sure you are checked out by your doctors...kidneys, liver etc. Heavy metal chelation can be really tough on regular people, much less sick people.
     
    Last edited: May 4, 2014
    tdog333, Little Bluestem and maryb like this.
  4. Charles555nc

    Charles555nc Senior Member

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    Any other questions?
     
  5. place

    place Be Strong!

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    How long will you be on the AV? and are you doing anyother protocals along with it?
     
  6. maryb

    maryb iherb code TAK122

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    @Charles555nc
    so glad to hear you are improving, sounds like you have a good doctor, so important to have the regular checks like you say, I still have 2 amalgams left so can't even think about starting chelation yet.

    I know at one time you were taking a lot of vit C as well?

    So did your doctor go after the Lyme first and then treat the viruses?
    where you are based, although I understand if your prefer not to say.
     
  7. Charles555nc

    Charles555nc Senior Member

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    I will try taking the arvs for 6 months to start.

    I only take 2-3 grams of sodium ascorbate a day, at least 2 hrs before or after meds. Other stuff I take in low amounts, methyl folate, methyl b12, iodine, organic white tea (anti bacterial), melatonin (once a week), selenium. Two days a week I take some tindamax (lyme cyst buster) that seems to help alot.

    I was fully treated (as much as there is) for lyme first, and then was treated for Chronic fatigue syndrone (virus focused). And kept up with reading and saw the test for XMRV and tested positive.

    Then found a special doctor brave enough to prescribe ARVs. Over the first year I tried them, couldnt tolerate them.

    Tried two more times and couldnt handle it. The next time I tried low fat diet and a large DMSA dose for 3 days before starting the meds, and that made the drugs much easier.
     
  8. maryb

    maryb iherb code TAK122

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    @Charles555nc
    thanks for your reply Charles, did you have IV antibiotics for the Lyme?

    I was somehow hoping that if I had treatment for Lyme then maybe my body could handle the viruses as happens with so many other folk:( or maybe not. Only way to find out is to do it.

    Glad to hear you're tolerating the ARV's better - really hope you manage to do the course and improve.
    getting rid of the heavy metals has been another big key in the process for you then hasn't it.

    I really don't know whether to just leave my 2 amalgams or whether to carry on with having them removed, the past few months have been hell after having 2 removed in Dec. Even having them removed by a holistic dentist I'm still suffering too much, practitioners in the US have much more of a handle on the whole thing, much more about it than just the removal isn't there.
     
  9. Charles555nc

    Charles555nc Senior Member

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    DMSA gets rid of heavy metals and strips the heavy metal coating off biofilms so your immune system can get in there.
    I kinda see it like tindamax...when I chelate and/or use tindamax I can have 20%-40% of my symptoms go away for ~two weeks before they come back...

    EDTA actually helps people with heart disease by removing calcium from hardened arteries. (I tried that before I got sick too)

    I had the portal put in my arm (that lead to my heart) and got iv antibiotics that way, cant say it helped much long term, but I found out clindamyacin was the best antibiotic for me, and used it for years to avoid disability, which eventually came when the antibiotics stopped working.

    I had one amalagram removed years before I got sick and replaced with a "composite". I dont know whether having to replace amalgrams is 100% necessary or an urban myth, but I had my one removed before chelating.

    I dont think some people will regain their health if they have a retrovirus...I actually was thinking about this for years...."what disease do you get that doesnt kill you but destroys your immune system long term..." and I thought of HIV...people actually die of opportunistic infections and not HIV itself.
     
    maryb likes this.
  10. Hip

    Hip Senior Member

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    It says here that EDTA resuscitates mitochondria, so this could be one reason EDTA improved your symptoms. Though I cannot find much in the way of scientific refs for this.
     
    Alea Ishikawa, Charles555nc and maryb like this.
  11. Daffodil

    Daffodil Senior Member

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    hi charles:)

    if ARV's stand for antiretrovirals, please be careful. i took AZT in 2010- 2012. permanent cardiac damage from it, i think. constant chest pain now.

    are you taking DMSA for mercury?

    xoxo
     
    Charles555nc likes this.
  12. maryb

    maryb iherb code TAK122

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    @Charles555nc thanks for the info about the chelators. From what I've read about it DMSA is the one I would choose, (not until I get these amalgams out) Good to hear that it also attacks the biofilms.

    @Hip
    A couple of products are also on that link, one is for heart health, 2 pills a day - one contains EDTA and the other vit/mineral, one of each to be taken every day.
    From the main article it appears that EDTA is recommended as a on-going therapy for people with heart problems.

    All the literature I read seems to contra indicate chelation whilst you have almagams in that's why I'm so desperate to get them out, but its certainly making me sicker. I also read that bacteria hijack the mercury so if you have an infection as I have, then the combination is worse.
     
    Charles555nc likes this.
  13. Charles555nc

    Charles555nc Senior Member

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    Hey Daffodil!

    Always love seeing someone as ambitious as myself. Im on Truvada and Isentress (Azt has a reputation for being very poisonous).

    Try and go get EDTA chelation through an iv. Its been known to encourage blood vessel growth and unblock blocked vessels in studies in Europe (Ive done it also personally). You might be able to find a doctor off of acam.org, but its pretty standard in alternative medicine practices, because its so good.

    Oral EDTA is poorly absorbed...if you cannot find or afford the iv form, I would definitely do suppository form instead.
    I took dmsa before I started the ARVS and I have only repeated once the next week (making sure those biofilms stay down lol). This is what I ordered last re EDTA: http://www.worldwellnessstore.com/detoxamin-1500-mg-30-suppositories.html?___store=default

    O and remember not to take supplements on the same day you take DMSA or EDTA.

    Metals removed by DMSA: antimony, lead, mercury, bismuth, cadmium, aluminum, tin- even Uranium (more common than you think). EDTA removes lead, cadmium, some iron, and calcium.

    Removing excess metals is widely known to be antibacterial and antiviral as well.
     
    Last edited: May 11, 2014
    maryb likes this.
  14. Daffodil

    Daffodil Senior Member

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    nice! thanks for making me smile....doing very poorly lately..

    xoxox
     
    maryb likes this.
  15. Charles555nc

    Charles555nc Senior Member

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    Reached a plateau, so I uped my dose to 3 isentress and 1 truvada. And then kept improving.
     
    vli likes this.
  16. Daffodil

    Daffodil Senior Member

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    Charles...have you tried viread? that's the one that seems to help me and dr. deckoff jones said it helped her too.
     
    Charles555nc likes this.
  17. Charles555nc

    Charles555nc Senior Member

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    Truvada is a combo of two hiv meds, which include the 1 from Viread, I think.

    Truvada: Tenofovir/emtricitabine
    Viread: Tenofovir disoproxil fumarate

    If I had to guess, Isentress has done 85% of my improvement, but was also the hardest one to deal with, as I wrote above.

    Going back on green tea as well, every other day, as I have a strong herx like reaction to it before.
     
    Little Bluestem likes this.
  18. Daffodil

    Daffodil Senior Member

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    wow that's awesome Charles. isentress didn't seem to help me too much, but I did hear of at least 1 person doing very well on it
     
  19. Hip

    Hip Senior Member

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    Raltegravir appears to have antiviral activity against the entire herpes family of viruses. See here. So this probably explains why ME/CFS patients benefit from it.
     
  20. Charles555nc

    Charles555nc Senior Member

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    Id be curious what your reaction to organic green tea is. I have a very strong reaction to it, even after the ARVs.
     

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